So frustrated on the wait...

Anonymous

So frustrated on the wait...

mnsotamom74

I’m 14 days exactly since my double mastectomy. My oncologist is the one who will discuss the pathology results. He encourages his patients to text or call, I did text him Friday to ask if anything was in and he replied that it looked like Tuesday and to “hang in there” well I didn’t want to bother him again so I called and spoke with his nurse who called me back and said the results were slowly coming in and should all be in for my appointment on Tuesday the 27th! I’m just frustrated and so anxious with all the waiting. I had really hoped and prayed I’d have the results before and she’s basically said he doesn’t do results over the phone which he never once mentioned before. I know I’m just being sensitive and overly emotional but I’ve just had it with how much control has been taken from my life.

Wised

mnsotamom, with all you've been through, you deserve to know what's in your results. I still do not understand why docs think they're protecting us or even themselves by withholding results until we're face to face. Waiting is the worst.

mnsotamom74

Waiting is the worst without a doubt, we already know I have breast cancer and nothing was in my lymph nodes, so why can’t I know if the rest is about what the biopsy information gave us or if it’s different? My oncologist doesn’t believe I’ll need chemo and he felt I’d only need radiation if I chose alumpectomy which I didn’t. I’d like to see if that’s still his opinion, it definitely makes me nervous, I just feel I need one or both as crazy as that sounds. I know I’m going to have to go on tamoxifen, he already mentioned that. I’m feeling I want a second opinion if he’s still of the belief I don’t need chemo or radiation, my mom had the same cancer as I do 8 years ago but she had lymph node involvement so chemo and radiation. I’m not afraid of having them, I just hate not knowing, I’m someone who feels better when prepared and I do daycare, so I have to take how I might be feeling into consideration.

ghostie13

Yep...the waiting is absolutely the worst. They kept doing one test after another when my results were always in some "grey area". Made for a month of waiting around for results so the docs could decide on chemo or rads or both. A month that felt like a Damn year to me. They won't tell you much of anything over the phone, if you have an appointment they will go over whatever results they have at that time with you......

I'm from Minnesota too.....SW corner of the state....

I am currently waiting to start rads, set for the 26th, waiting due to a blister on my breast. Yes a blister.....a blister from a hot pack the doc told me to use to decrease the size of a seroma. Apparently the universe thinks I need a giant lesson in patience...

mnsotamom74

I’m from NW Minnesota:) A blister on the breast? Ouch!! I’m glad it’s not just me frustrated with the waiting! I understand my oncologist doesn’t have time to do an in depth discussion on my results over the phone, I’m not asking for that, I can wait for the 27th for that, I just would have liked to know if he felt the biopsy results ( which diagnosed me) were pretty in line with the pathology results. I figured with Thanksgiving and his office being closed most of the week I was going to run into this problem. So I’ll just work on my non existent patience lol. My mom keeps telling me I better get used to this as I go on this journey I didn’t ask to be on. I can’t say just how much these boards have come to help me, this is the only place I’ll go online, everything else gets me too freaked out.

Thanks for your kind response:)

LillianGish

I totally understand the frustration of waiting for critical data about cancer. I’ll be waiting at least a month to get my Mammaprint score to see if I’ll need chemo. All because the pathology report was delivered late.

Ridiculous, and so mean to do this to people.

mnsotamom74

oh my gosh, a month?? That is absolutely ridiculous and unacceptable. That is beyond cruel. My mom had the most amazing oncologist ( unfortunately he's retired or I'd be going to him) his wife is a breast cancer survivor and he understood from going through the journey with her just how critical it is to get results in a timely manner for the well being of the patient. I think that's all any of us wish, that doctors would ask themselves how they would/will feel if they themselves are ever faced with a cancer diagnosis. I know in just this short time since my diagnosis and the horrible wait for the biopsy that lead to my ( they sat on the results because my doctor was on vacation) I'm looking at this in an entirely different way.

ghostie13

The blister doesn't hurt, the side of my breast is still kind of numb. So I didn't even feel it when it happened. Hopefully this is healed enough now and no more delays..

The anxiety at times has been overwhelming. I have a med for it but hate taking it.....makes me tired and groggy, feel like a zombie. It seems like all the tests, labs etc could be done in a more timely manner. This much anxiety isn't good for anyone.....

mnsotamom74

I’m so glad the blister isn’t painful, I hope no more delays for you. My doctor gave me something for the anxiety as well, just as you described, tired, groggy, and for me very forgetful, so I’m trying not to use it and instead attempting to stay really busy.

Salamandra

Tell your doc that the anxiety meds interfere too much with your functioning for you to use them for anxiety. There are other options and if the first one doesn't work, keep pushing for better ones. This is our health and our lives.

mnsotamom74

you’re so right, the days of not speaking up for myself because I’m trying to be the patient that never complains needs to get pushed aside, this is our health and our lives, I need to get a better back bone